{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,5,14]],"date-time":"2025-05-14T09:49:27Z","timestamp":1747216167807,"version":"3.40.5"},"reference-count":0,"publisher":"IOS Press","isbn-type":[{"type":"print","value":"9781643684567"},{"type":"electronic","value":"9781643684574"}],"license":[{"start":{"date-parts":[[2024,1,25]],"date-time":"2024-01-25T00:00:00Z","timestamp":1706140800000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2024,1,25]]},"abstract":"<jats:p>SelEe is a German citizen science project aiming to develop a smartphone app for a patient-managed record. The goal is to study rare diseases with the support of interested citizens and people affected by rare diseases. We established a core research team, including professional researchers (leading the project) and citizens. Citizens have the opportunity to discuss the progress, make suggestions regarding the app\u2019s design and data entry and contribute to the dissemination of the project. To gather feedback and experiences from the core research team, we performed an online questionnaire regarding the topics \u201cinfluence and communication\u201d, \u201cimprovements and learning effect\u201d, and \u201csatisfaction\u201d. Finally, 9 citizens of the core research team participated. The results show that the citizens are very satisfied with the design of the app, their participation opportunities and the communication in the project.<\/jats:p>","DOI":"10.3233\/shti231145","type":"book-chapter","created":{"date-parts":[[2024,1,25]],"date-time":"2024-01-25T10:26:53Z","timestamp":1706178413000},"source":"Crossref","is-referenced-by-count":0,"title":["Rare Diseases in Citizen Science \u2013 Preliminary Experiences in Developing a Personal Health App"],"prefix":"10.3233","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0058-155X","authenticated-orcid":false,"given":"Jannik","family":"Schaaf","sequence":"first","affiliation":[{"name":"Goethe University Frankfurt, University Hospital, Institute of Medical Informatics, Frankfurt, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Andreas","family":"Khouri","sequence":"additional","affiliation":[{"name":"Institute of Information Systems, University of Applied Sciences Hof, Hof, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Thomas","family":"Zerr","sequence":"additional","affiliation":[{"name":"Institute of Information Systems, University of Applied Sciences Hof, Hof, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"J\u00f6rg","family":"Scheidt","sequence":"additional","affiliation":[{"name":"Institute of Information Systems, University of Applied Sciences Hof, Hof, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michaela","family":"Neff","sequence":"additional","affiliation":[{"name":"Goethe University Frankfurt, University Hospital, Institute of Medical Informatics, Frankfurt, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Holger","family":"Storf","sequence":"additional","affiliation":[{"name":"Goethe University Frankfurt, University Hospital, Institute of Medical Informatics, Frankfurt, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"7437","container-title":["Studies in Health Technology and Informatics","MEDINFO 2023 \u2014 The Future Is Accessible"],"original-title":[],"link":[{"URL":"https:\/\/ebooks.iospress.nl\/pdf\/doi\/10.3233\/SHTI231145","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,1,25]],"date-time":"2024-01-25T10:26:54Z","timestamp":1706178414000},"score":1,"resource":{"primary":{"URL":"https:\/\/ebooks.iospress.nl\/doi\/10.3233\/SHTI231145"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,1,25]]},"ISBN":["9781643684567","9781643684574"],"references-count":0,"URL":"https:\/\/doi.org\/10.3233\/shti231145","relation":{},"ISSN":["0926-9630","1879-8365"],"issn-type":[{"type":"print","value":"0926-9630"},{"type":"electronic","value":"1879-8365"}],"subject":[],"published":{"date-parts":[[2024,1,25]]}}}